MY BOY BY DEANNA SCHULTZ
Caleb swims, rides horses, zip lines, camps, sings, skates and plays hockey, goes to concerts, plays video games and the computer and enjoys anything and everything fun. He has a wonderful sense of humour and wit, is confident and aspires to be a puppeteer or actor one day. He is also a teenager who is in Grade 7 and is sassy and a little moody at times. Overall, he is just an average kid who enjoys his life.
Caleb was born at 27 weeks weighing one pound 13 ounces, and he was 12 inches in length. This is the same as two bricks of butter and an unsharpened pencil. Because of the prematurity, Caleb has been diagnosed with moderate spastic quadriplegia (affecting all four limbs) cerebral palsy or severe spastic diplegia (both legs) cerebral palsy.
It is a very trying time when you first receive a diagnosis. Your worries can consume you and it is very overwhelming. What I can tell you is that it gets easier and you can adapt. For me, the first couple years were the hardest. Not only was Caleb’s body premature but his immune system as well. We spent 19 months of the first three years in and out of the hospital with respiratory issues, aspiration and reflux and finally having a G-tube inserted to help him with his feeding and swallowing. This was not including all the regular appointments for cardiac echoes, MRIs, x-rays and numerous other tests. Life was pretty exhausting during that time.
Once we were out of the medical crisis, things calmed down. Caleb learned to sit up at three years of age, walked with a walker at four, outgrew his G-tube at five, and has kept progressing ever since. There have been some other medical interventions such as botox for spasticity and orthopedic surgery but he continues to progress and be stronger every day. This year he was able to stand up on his own without any assistance.
I am proud of my son every day for the things he has accomplished and for what he strives to do. He is in a wheelchair but has never let his disability define him. He has spoken in front of hundreds of people, young and old, in regards to how his disability affects him. His motto in life is “It’s not how you do it. It’s that you are doing it.” He never says he can’t. He says “I can – just differently.” He has changed my life and inspired me to do better, be better and try harder. It is because of him that I am who I am today.
